 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Prostate Cancer / December 2007Sanity Check (longish post)
First, a hearty thanks to this forum. I hope those who actively respond fully understand what fantastic value you provide to we "new" club members. I haven't posted since announcing my diagnosis, but just lurking along with my reading (Walsh, Dattoli, Scardino, PUBMED, etc) I have learned much. I'm nearing the end of "Prostate School" and now find myself closing in on a treatment selection and just wanted to be sure of thought process and understanding. Any one who may offer a base I haven't touched or explored or a point I have overlooked, please jump in. I remain uncomfortable with several questions as listed below. FYI My biopsy was done based on family history, my recent breast cancer and my brothers experience with a .4 psa, a failed DRE and a biopsy revealing a Gleason 8. Ironically the lump found on his DRE was NOT cancer. He received bracy and beam 7 years ago and is clear at this point. Thought process to this point. Age 68. Out of shape but in good health overall. Prostate is normal to DRE PSA steady at 1.6 for last 5 years (adjusted for Proscar 2 x .8 lab result) 12 core biopsy on 9/19/07 with 5% of one core showing grade 3 cancer Gleason score 6. Staged as T1C 10/12/07 Bone Scan and pelvic CT showed no evidence of metastatic disease. 10/16/07 followed up with MD to discuss treatment options. 11/09/07 Met with Uro Surgeon (RALP guy) All inputs indicate I am good candidate for any therapy. He pointed out I'm at an awkward age, no clear drivers to any one approach. Further appts in January with second surgeon and a bracy RadOnc. I'm in the Philadelphia area and have highly qualified folks for whatever treatment path I take. I have narrowed my choices to two. I admit I am favoring RALP at this point. Option 1. Robotic assisted radical prostatectomy over open procedure. Nerve sparing procedure is assumed. Johns Hopkins outcomes taken as "gold standard". o Minimally invasive, quicker recovery. o Results seen as equivalent to the open procedure. o No studies found nor any physician I spoke with claim cure rate better than one or the other in my case of low grade, clinically confined disease. o The open RP still seen as the "gold standard" with highest cure rate. RALP seen as slightly better than RT, but that is not study based. o Side effects include impotency and incontinence to variable degrees. Such effects to whatever degree are immediate but may mitigate in time. o Salvage RT available should cancer recurr. Option 2. Bracytherapy. o Outpatient procedure or overnight at worst. Recovery is virtually immediate (days vs. weeks). o Side effects include impotency and incontinence to variable degrees. Such effects may happen over time, up to 6+ years. o Results seen as equivalent to the RALP procedure for my case of low grade, clinically confined disease. o Salvage surgery problematic in the face of recurrence due to condition of tissue (per surgeon). Follow on beam therapy not usually indicated for my case, per my uro. Will need to review this with Rad Onc. Questions not yet answered. (I'm caught up in analysis paralysis ;-) ...Can my Gleason Score be trusted. Small 5% of 1 core (<1% of total 12 core sample) is driving this whole process. Is it unreasonable that could be a 7 or 8?. Will never know until after surgery, never at all if radiation is done. Some readings have suggested that post radical paths often find higher grade cancers than biopsy. ...Assumption is confined but if not then what for either surgery or bracy? ...If external beam deals with non localized case, what is downside to use in my case (just in case). ...Does my low PSA preclude PSADT as a warning flag or indicative of a small indolent cancer that may never bother me. ...Can this PCa be "lived with". Am I researching over treatments, trading short term effects against low likelihood effects 15 years from now. Following link discusses "watchful Surveillance". Johns Hopkins calls it "Expectant Management". Raises the very real question of what such waiting will do to ones mental health, but ... http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlu s&list_uids=15582244 Again my thanks to all for what is perhaps the best, most focused and generally well mannered Usenet group I have encountered. Les (snip) > I haven't posted since announcing my diagnosis, but just lurking > along with my reading (Walsh, Dattoli, Scardino, PUBMED, etc) I have [quoted text clipped - 4 lines] > please jump in. I remain uncomfortable with several questions as > listed below. I'd recommend the best PCa text there is (yes, I know some will argue with that assessment; they are mistaken), _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa specialist Stephen B. Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI website and the like. A lifesaver. I know. Amazon and Barnes & Noble have apparently run out of inventory, but the authors tell me that it's being addressed. (snip) > Questions not yet answered. (I'm caught up in analysis paralysis ;-) > [quoted text clipped - 3 lines] > at all if radiation is done. Some readings have suggested that post > radical paths often find higher grade cancers than biopsy. Yes, the Gleason score is often adjusted upwards after evaluation of the gland post-surgery. The score can be validated by an expert in the field. The specimens are shipped to the lab per instructions. Here is a list: Bostwick Laboratories [800] 214-6628 Dianon Laboratories [800] 328-2666 (select 5 for client services) Jon Epstein (Hopkins) [410] 955-5043 or [410] 955-2162 David Grignon (Michigan) [313] 745-2520 Jon Oppenheimer (Tennessee) [888] 868-7522 UroCor, Inc. [800] 411-1839 > ...Assumption is confined but if not then what for either surgery or > bracy? Approximately 30% of RPs fail to cure and the patient must undergo "salvage treatment." Usually, that is radiation to what some call the "prostate bed." Plus maybe the regional lymph nodes. But if the cancer is systemic, this will not be curative, either. One must then move to systemic treatments such as ADT and/or chemotherapy. > ...If external beam deals with non localized case, what is downside > to use in my case (just in case). It is a local treatment, and will have no effect upon cells that are elsewhere. > ...Does my low PSA preclude PSADT as a warning flag or indicative of > a small indolent cancer that may never bother me. That's what S. Holmes would call a "vexed question." I have discussed it with my med onc and have read the literature. Conclusion: when results are <1.0 ng/mL, movements are of little consequence except as warnings to continue monitoring. I'm betting my life on that. > ...Can this PCa be "lived with". Am I researching over treatments, > trading short term effects against low likelihood effects 15 years > from now. Sorry, there is no certainty to this business and it's a matter of judgment and maybe gut feeling. Based upon a thorough understand of the case. (snip) Regarding doubling the PSA score while on a 5-alpha reductase inhibitor such as Proscar: that will no longer apply after treatment. Then, the PSA is what it is, 5-AR inhibitor or no. It's a long story based upon the manufacturer's fear that men taking it for its "label" purpose, treatment of BPH, might be misled into believing that they don't also have PCa by reason of the decrease in PSA caused by the reduction in gland size from the drug. IOW, the Proscar reduces the size of the gland. This reduces the PSA. But if the gland is also afflicted by PCa, the patient might not discover it due to that reduction. Hope I've made sense. Objective, encyclopedic and reliable information is available on the website of the Prostate Cancer Research Institute (PCRI) at: http://prostate-cancer.org/index.html Good hunting. Regards, Steve J "Empowerment: taking responsibility for and authority over one's own outcomes based on education and knowledge of the consequences and contingencies involved in one's own decisions. This focus provides the uplifting energy that can sustain in the face of crisis." --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled "The Empowered Patient's Guide." > I'd recommend the best PCa text there is (yes, I know some will argue > with that assessment; they are mistaken), _A Primer on Prostate Cancer The problem, Les, and only if you might weigh Strum over his competition, is that Strum's doubters include many oncologists who research, publish, and hold conferences on the subject of prostate cancer. Their doubts center around his lack of peer-reviewed proof for many of his claims. > when results > are <1.0 ng/mL, movements are of little consequence except as warnings > to continue monitoring. I'm betting my life on that. Same here, more or less. The last number my onc suggested was 0.6, and it referred specifically to timing for salvage radiation if my initial RP proves inadequate and my PSA were climbing rather than steady. I.P. On December 13, IPF replied to me, in pertinent part: >> I'd recommend the best PCa text there is (yes, I know some will >> argue with that assessment; they are mistaken), _A Primer on [quoted text clipped - 5 lines] > cancer. Their doubts center around his lack of peer-reviewed proof > for many of his claims. That is one of the mistakes I anticipated. Suggest IPF check Pub Med. And see the schedule of speakers at the PCRI Conference in Los Angeles, September 7 - 9. And, as I have said again and again, still hoping that someone will pay attention, Strum is a clinician. He treats *people*. That is his primary interest, not lab work. And he has most certainly produced the above book, as to which no one has proven any error. Regards, Steve J "Flagrantly, we docs ignore the declaration of biology. We do this out of ignorance, greed or both. The prime directive of the physician, the real physician, is patient outcome & not physician income (or ego)." -- Stephen B. Strum, MD > see the schedule of speakers at the PCRI Conference in Los Angeles, > September 7 - 9. Of which Institute, of course, Strum is a co-founder and past president who has planned, moderated and participated in many PCRI conferences. Think my local chapter of Computer Dudes'R'Us would turn down a talk from Mr. Gates? I've have nothing against Strum. His book and other pubs are great, and, in arenas such as ADT SEs, unique in his field. Maybe he *is* Da Bomb. But I believe claiming he and his claims *are* the best without proving it, especially when he is unable to convince the oncology professional community at large of same, seems out of character for someone so legitimately insistent that the rest of us cite references to support our claims. All I'm asking is that people indicate that their opinions are *opinions* rather than Gospel (or prove those opinions are facts), so newbies can tell the difference. Better yet, I think we should distinguish between fact (or at least professional consensus), research findings, professional opinions, and personal opinions. My concern is that newbies may think all they need to read is Strum, that he really is, in fact, The King of the Prostate Gurus. Of course, even if that were proven I'd still offer my personal opinion that every PC book I read, most certainly including Strum, provided information useful in my decisions. I.P. IPF replied to me: >> see the schedule of speakers at the PCRI Conference in Los Angeles, >> September 7 - 9. > > Of which Institute, of course, Strum is a co-founder and past > president who has planned, moderated and participated in many PCRI > conferences. So? > Think my local chapter of Computer Dudes'R'Us would turn down a talk > from Mr. Gates? [quoted text clipped - 3 lines] > Bomb. But I believe claiming he and his claims *are* the best without > proving it, I think that it is perfectly clear that I was expressing my opinion. > especially when he is unable to convince the oncology professional > community at large of same, seems out of character for someone so > legitimately insistent that the rest of us cite references to support > our claims. Well, this is an instance. What are IPF's references to support the allegation that Strum "....is unable to convince the oncology professional community....." Maybe that's IPF's personal opinion, eh? I doubt that he has polled the "community" on the point. > My concern is that newbies may think all they need to read is Strum, > that he really is, in fact, The King of the Prostate Gurus. Not even I have ever suggested that the book should be anyone's sole source of information on this very complex and sometimes contentious subject. Regards, Steve J > What are IPF's references to support the > allegation that Strum "....is unable to convince the oncology > professional community....." Maybe that's IPF's personal opinion, eh? I > doubt that he has polled the "community" on the point. As I have explained before, this came straight from my uro/ surg/ onc/ professor/ researcher/ author/ lecturer/ MSK post-doc/ national PC conference organizer/ active member of the national PC community. I value his community's professional opinion over most laymen's. I.P. IPF replied to me: > As I have explained before, this came straight from my uro/ surg/ > onc/ professor/ researcher/ author/ lecturer/ MSK post-doc/ national > PC conference organizer/ active member of the national PC community. Uh huh. That's not citing a reference. And, um, lessee now. That is supposed to be the personal opinion of one person, right? That's not "the oncology professional community." Or, if this single reference claimed that "the oncology professional community" harbors that opinion, maybe that's pure guesswork -- unless this so-qualified source in which F has about the same faith as I have in Strum, had polled "the oncology professional community." Name, date, location of the reference, please. Never mind, it won't be forthcoming. I and others have our conclusions, F and Evens have theirs. Never the twain shall meet.... Let's drop it. We're doing Les no favor. Remember? That's the purpose here. Regards, Steve J "A man's most valuable trait is a judicious sense of what not to believe." -- Euripides > On December 13, IPF replied to me, in pertinent part: > [quoted text clipped - 16 lines] > interest, not lab work. And he has most certainly produced the above > book, as to which no one has proven any error. All of them, Walsh, Scardino, Catalona, etc. are clinicians who treat people. In addition they work regularly with oncologists, pathologists, radiation therpaists, etc. who also, in addition to doing significant research, also treat people. Strum does not gain special knowledge about the subject because he does less research. > Regards, > [quoted text clipped - 5 lines] > income (or ego)." > -- Stephen B. Strum, MD On December 14, Leonard wrote: > All of them, Walsh, Scardino, Catalona, etc. are clinicians who treat > people. In addition they work regularly with oncologists, > pathologists, radiation therpaists, etc. who also, in addition to > doing significant research, also treat people. I've never denied it. > Strum does not gain special knowledge about the subject because he > does less research. I'd appreciate it if Leonard would read the voluminous references in the book, then see if he's willing to repeat that allegation. Yes, Strum publishes fewer articles. So what? Doesn't mean he is ignorant, as Leonard implies. Regards, Steve J "As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data." -- Charles L. "Snuffy" Myers, MD Medical oncologist. PCa survivor. Snuffy doesn't publish much, either. Maybe he's ignorant, too, Leonard. >>Strum is a clinician. He treats *people*. That is his primary >> interest, not lab work. And he has most certainly produced the above [quoted text clipped - 5 lines] > research, also treat people. Strum does not gain special knowledge > about the subject because he does less research. The surgical, medical, and radiation oncs who advise me also each their specialties to med students, extensively practice their specialties on civilian and VA cancer patients including each other, instigate and perform and publish and present and organize conferences on clinical cancer research, write excellent PC books for us dummies, interface closely and often with Seattle's very extensive university and commercial cancer research community, and respond within hours to patient e-mails. They have outstanding credentials and impress me strongly, but I still don't presume or claim they or their book is or is not the best available. Strum has flashier graphics. I.P. >> I'd recommend the best PCa text there is (yes, I know some will argue >> with that assessment; they are mistaken), _A Primer on Prostate Cancer [quoted text clipped - 4 lines] > cancer. Their doubts center around his lack of peer-reviewed proof for > many of his claims. Let me also add that Les is certainly not a candidate for hormone therapy at this point. He is not going to get any advice at this point from Strum that he hasn't found already at more conventional sources. >> when results >> are <1.0 ng/mL, movements are of little consequence except as warnings [quoted text clipped - 5 lines] > > I.P. > Let me also add that Les is certainly not a candidate for hormone > therapy at this point. He is not going to get any advice at this > point from Strum that he hasn't found already at more conventional > sources. Well, no doubt Les should be grateful for Dr. Evens' advice. The Doctor is a mathematician, BTW. Evidently Leonard, who has made something of a habit of sneering at Strum, believes that the latter would recommend "hormone therapy." I'm very sorry that Les is subjected this. I recommend that he study and make up his own mind. Regards, Steve J Walsh, Dattoli and Scardino are well respected and considered among the highest in their fields. But none of us would be wrong to also consult with or read the wrtings of Dr. Strum. The problem is that Steve Jordan places Strum on sort of altar as the high priest of Prostate Cancer . At the same time he diminishes the value of physicians like Scardino. I think this tends to polarize members of this newsgroup. I never read Leonard Even's comments as sneering... Actually I appreciate reading his well reasoned comments and believe that his training as a mathematician does, in fact, give him special abilities for sorting through the complexities of this disease. I hesitate to make these statements, because I fear that my words will just encourage some more sniping... But I think it is wrong to suggest that only one doctor has the corner on treating prostate cancer. Bert >> Let me also add that Les is certainly not a candidate for hormone therapy >> at this point. He is not going to get any advice at this point from [quoted text clipped - 12 lines] > > Steve J (snip) > I hesitate to make these statements, because I fear that my words will just > encourage some more sniping... But I think it is wrong to suggest that only > one doctor has the corner on treating prostate cancer. Which of course I have never done. Nor has Dr. Strum. And if Bert thinks this is "sniping" he hasn't seen what has gone on before. Regards, Steve J > Bert > [quoted text clipped - 15 lines] >> >> Steve J > I hesitate to make these statements, because I fear that my words will just > encourage some more sniping... Don't sweat it. Politicians lie, glaciers calve, fingernails grow, babies poop, snipers snipe, and prostates misbehave. It's what they all do "for a living", and they will find a way to do it regardless of our best efforts. So we may as well all follow our consciences and deal with the consequences -- or ignore them -- as we choose. I.P. On December 15, Mike wrote: (ka-snip) > Politicians lie, glaciers calve, fingernails grow, > babies poop, snipers snipe, and prostates misbehave. It's what they all > do "for a living", and they will find a way to do it regardless of our > best efforts. So we may as well all follow our consciences and deal with > the consequences -- or ignore them -- as we choose. Omigod! Do I really truly for sure find myself agreeing with him? I can't stand it! Regards, Steve J Les...See my comments inserted within your text...Best wishes and good health, ron On Dec 13, 2:04 pm, "Les" <unwanted_mailxxx @ Comcastxxx.net fix the xxx> wrote...snip... > He pointed out I'm at an awkward age, no clear drivers to any one approach. There's a brief, written test that docs can administer to measure lower urinary tract performance. If it already problematical, RT may be contra-indicated. > Option 1. Robotic assisted radical prostatectomy over open procedure. Nerve > sparing procedure is assumed. Johns Hopkins outcomes taken as "gold > standard". > > o Minimally invasive, quicker recovery. Hmmm, check out this recent article. I'm sure there are articles that argue the other way, my point is that I don't think there is really a significant difference regarding this aspect of treatment http://www.goldjournal.net/article/PIIS009042950701802X/abstract Short-Term Health Outcome Differences Between Robotic and Conventional Radical Prostatectomy Conclusions: The results of this prospective study have shown that both robotic and conventional radical prostatectomy provide comparable short-term postdischarge recovery, including time to normal and full activity, driving, and postdischarge narcotic use. > o Results seen as equivalent to the open procedure. Do you mean oncologically equivalent? What clear long-term (>= 5 year) evidence evidence exists to support that position? > RALP seen as slightly better than RT, but that is not study based. Then waht significance does it carry? > Questions not yet answered. (I'm caught up in analysis paralysis ;-) > [quoted text clipped - 3 lines] > radiation is done. Some readings have suggested that post radical paths > often find higher grade cancers than biopsy. Steve J's comments sum this up. Have your slides read by an expert. This will lessen the likelihood of a different GS emerging post-op. > ...Does my low PSA preclude PSADT as a warning flag No, studies have shown that PSADT is still a reliable barometer for men using 5-AR inhibitors > ...Can this PCa be "lived with". Am I researching over treatments, trading > short term effects against low likelihood effects 15 years from now. Certainly many men are being treated today who could live out their normal lifespan without treatment. How much longer might you live? The smaller the number, the more likely the answer is yes. If you are seriously considering this option, work closely with a PCa doc who is knowledgeable about WW/AS. Ask him if you fall into the "ideal" candidate category. I suspect you might. Ron.. thanks for your thoughts and inputs. My further comments in line with snipping. > Les...See my comments inserted within your text...Best wishes and good > health, ron > > There's a brief, written test that docs can administer to measure > lower urinary tract performance. If it already problematical, RT may > be contra-indicated. Are you referring to the AUA symptom score. I ranked as high moderate and my uro said RT was an option. >> Option 1. Robotic assisted radical prostatectomy over open procedure. >> Nerve [quoted text clipped - 6 lines] > argue the other way, my point is that I don't think there is really a > significant difference regarding this aspect of treatment > http://www.goldjournal.net/article/PIIS009042950701802X/abstract I had not seen that aticle. Thanks for the link. As you suggest there are articles and studies which can support almost any reasonable choice. That seems to be the heart of controversy as regards treatment types. Its all up to the patient and little "conventional wisdom" is available as guidence. .> >> o Results seen as equivalent to the open procedure. > > Do you mean oncologically equivalent? What clear long-term (>= 5 > year) evidence evidence exists to support that position? None... In fact "clear long term" studies are still to be had, although short term indications (margin negativity, impotence, incontinence) are reported good. But clearly no 10 year studies exist now and won't for another 5-6 years. Equally clearly no controlled randomized studies are ever likely to exist. I find much more grey in the topic than I had hoped. >> RALP seen as slightly better than RT, but that is not study based. > > Then waht significance does it carry? Merely reflective of my impressions to this point. Oncologically, I rank RRP ahead of any RT treatment. If I then make the assumption the RALP is = RRP, then I see RALP and better than RT. Yeah, I know... soft. >> Questions not yet answered. (I'm caught up in analysis paralysis ;-) >> ...Can this PCa be "lived with". Am I researching over treatments, [quoted text clipped - 7 lines] > knowledgeable about WW/AS. Ask him if you fall into the "ideal" > candidate category. I suspect you might. I am considering the Expectant Management program at Johns Hopkins. They are also well qualified to provide a second opinion on my biopsy which might prove useful. Thanks again for your input. Les > Questions not yet answered. (I'm caught up in analysis paralysis ;-) > [quoted text clipped - 3 lines] > radiation is done. Some readings have suggested that post radical paths > often find higher grade cancers than biopsy. You can send the samples to another lab for confirmation, but I have never seen anyone here go from a Gleason 6 to a Gleason 8. I think your choice is still valid if it were a Gleason 7. > ...Assumption is confined but if not then what for either surgery or > bracy? If you have surgery now, you can do radiation later. If you do brachy now, I think radiation is not usually an option later. But maybe a brachy patient can refute that. > ...If external beam deals with non localized case, what is downside to use > in my case (just in case). I believe EBERT is always a localalized treatment. It is used as a primary treatment when the cancer is considered to be confined to the prostate; ergo local. It is often palliative when tumors are found away from the prostate. > Following link discusses "watchful Surveillance". Johns Hopkins calls it > "Expectant Management". Raises the very real question of what such > waiting will do to ones mental health, but ... PSAD is a very dicey thing. You have to determine your risk (PSAD) as compared to your age and your probable mortality. If you figure on living to 88, then radiation might be an issue and your PSAD may get you if you don't treat the cancer.  SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04 10/11/07 Non Illegitimi Carborundum Questions that pop to my mind include: How long do the men in your tree live? 70's, I'd consider watchful waiting by whatever name you wish to call it. 90's, I might act now IF further research supports it (don't some leading oncs say low PSA G6 PC can lie fallow for decades?). 80's, I'd ask the next question: Are you a worrier? If so, WW may drive you nuts. But then so will quarterly PSA checks, so maybe that's moot. You analyze things. How are you going to analyze your future path if you fry the data before looking at it (i.e., radiate your prostate bed first time up to bat)? Which concerns you more, treatment speed bumps or the rest of your life? IOW, what's a month compared to 10-30 years? I.P. > Questions that pop to my mind include: > [quoted text clipped - 14 lines] > > I.P. Thanks for the response. My father and his lived 84 years. I'm concerned only about a high probability curative treatment. Les > I'm concerned only about a high probability curative treatment. Then you know that, in your early, well-confined, and low-grade case, your cure prospects are very good with radiation or surgery. Pick one and "enjoy". I.P. |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.